Does adapting a self-report instrument to improve its cognitive accessibility for people with intellectual disability result in a better measure? - A cognitive interview study.

BACKGROUND AND AIMS: We investigated whether improving the cognitive accessibility of a widely used self-report measure leads to better understanding and more accurate answers in a sample of adults with mild intellectual disability and borderline intellectual functioning. METHODS AND PROCEDURES: We undertook a series of cognitive interviews before and after adaptation of the instructions and selected items of an existing self-report measure of adaptive functioning. Interview results and participant feedback were supplemented with quantitative comparisons between participant and carer scores. OUTCOMES AND RESULTS: Adaptation based on participant experiences and preferences combined with evidence-informed guidelines improved understanding and accuracy. Self-report and carer-report scores showed greater convergence after adaptation; this occurred because people with intellectual disabilities appeared to understand the self-report measure more effectively. CONCLUSIONS AND IMPLICATIONS: The results show that adaptation of the self-report instrument to suit the needs and preferences of people with mild intellectual disability or borderline intellectual functioning leads to a more accessible measure and more reliable and valid results. Results also highlight the importance of complementing proxy reports with a first-person perspective in assessment as clients and informants may differ in their assessment of behavior and skills.

Improvement of palliative care for people with intellectual disabilities: A multi-site evaluation.

BACKGROUND: To improve the quality of palliative care, six evidence-based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. METHOD: The RE-AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) structured the evaluation. Data sources were online questionnaires completed by 299 professionals at baseline (response 45.2%) and 250 professionals after 2.5 years (35.1%), 11 semi-structured group interviews with 43 professionals, field notes and implementation plans. RESULTS: A total of 767 professionals and 43 teams were reached. The effectiveness of the intervention was demonstrated in an improved knowledge of palliative care policy and increased competences among professionals. 79% of the professionals adopted tools in the toolbox. The participatory action research method was perceived as valuable in driving change. CONCLUSIONS: Improving palliative care needs a context-specific, flexible approach, with involvement of all stakeholders.

Improving palliative care for people with intellectual disability: a self-assessment of policies, practices and competencies in care services.

BACKGROUND: Providing care for ageing and vulnerable people with intellectual disability (ID) is challenging, and professionals working in ID care often have limited experience in palliative care. The current study provides insight into palliative care practices in ID care services and competencies of professionals and identifies ways to improve palliative care for people with ID. METHODS: For this study ten services in the Netherlands were recruited that provide care for people with mild to profound ID. Professionals in each of these services conducted a self-assessment of their palliative care policies and practices based on nine core element of palliative care described in the Dutch Quality Framework for Palliative Care. The self-assessment included a medical file review of a total of 100 people with ID who died non-suddenly. In addition, 424 professionals from the services returned a digital questionnaire on palliative care competencies and training needs. RESULTS: The self-assessments showed that individual care plans were recorded for people with ID and that multidisciplinary teams provided physical, psychological, social and spiritual care. However, other core elements of palliative care, such as cooperation with other organisations and expertise in palliative care, were less present in ID care services. Only half of the services collaborated with regional organisations in palliative care, and most services listed no requirements for the palliative care skills of their professionals. The questionnaire showed that almost 10% of the professionals reported that they were not at all competent in providing palliative care, and 74% felt that they needed training in palliative care. Reported areas for improvement in the provision of palliative care were increasing the quality of palliative care, improving the expertise of professionals and identifying palliative care needs earlier. CONCLUSIONS: To improve palliative care in ID care services changes are required both in competencies of professionals, and organisational policies and practices. Services should enhance awareness about palliative care for people with ID, strengthen collaboration with palliative care services, and offer training or support for professionals in assessing and meeting the needs of people with ID at the end of life.

"It was one of those complicated cases": health practitioners' perspectives and practices of providing end-of-life care for people with profound intellectual and multiple disability.

BACKGROUND: Due to developments in health and social care, people with profound intellectual and multiple disability (PIMD) are living longer than ever before, meaning they are increasingly experiencing life-threatening health conditions requiring palliative care. Little is known about providing end-of-life care for people with PIMD. The aim of this study was to explore health practitioners' perspectives and practices relating to end-of-life decision-making and planning for people with PIMD. METHODS: Seven in-depth semi-structured interviews were conducted with health practitioners employed in a range of hospital and community services throughout Melbourne, Australia. Questions were designed to gather information about their experience, perceptions, and attitudes relating to people with PIMD during and at the end of their life. Each interview, ranging from 40 to 60 min in length, was audio recorded and transcribed. Inductive thematic analysis was used to analyse the data. RESULTS: Four main themes emerged: limited participation, bias, dignity, and quality of death. Health practitioners indicated that people with PIMD are frequently excluded from participating in decision-making related to end-of-life care. Participants discussed reasons for this exclusion including challenges with communication and cognition. Participants reported a need for additional support and guidance in providing care for people with PIMD at the end of life. Professional and family bias played a role in end-of-life decision-making for people with PIMD. Participants reported a disproportional focus by palliative care practitioners on physical as opposed to emotional and spiritual well-being for patients with PIMD at the end of life. Finally, participants reported that people with PIMD generally did not die in specialised palliative care settings, but in segregated supported living environments. CONCLUSIONS: Due to negative perceptions of a person with PIMD's decision-making capacity, people with PIMD are likely to be assessed as unable to express choice and preference regarding end-of-life care and are offered limited opportunity to be involved in their own end-of-life care. This research provides guidance for the development of training and professional development relating to people with PIMD at the end of life. It is hoped that this will increase the accessibility of end-of-life services for people with PIMD, ensuring that a respectful and dignified death can be a reality for all humankind regardless of disability.

Development, Implementation, and Evaluation of an Advance Care Planning Program for Professionals in Palliative Care of People With Intellectual Disability.

In this article we describe how an advance care planning (ACP) program was developed, implemented, and evaluated. Our aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on 10 competencies needed for ACP and was developed in a co-design process with people with ID, relatives, and professionals. The program was implemented in six ID care organizations in the Netherlands and consisted of an information pack, a training course, and an implementation interview about implementing ACP. Professionals indicated that their competencies had improved, particularly regarding communication and the application of ACP as a standard element in palliative care practice. This program therefore seems helpful in training ID care professionals in the competencies needed for ACP.

Sustainment of Innovations in Palliative Care: A Survey on Lessons Learned From a Nationwide Quality Improvement Program.

CONTEXT: Although much is known about factors influencing short-term implementation, little is known about what factors are relevant for the long-term sustainment of innovations. In the Dutch National Quality Improvement Program for Palliative Care, innovations were implemented in 76 implementation projects. OBJECTIVES: To give insight into the sustainment strategies used and factors facilitating and hindering sustainment. METHODS: Online questionnaire with prestructured and open questions sent to the contact persons for 76 implementation projects, 2-6.5 years after the start. RESULTS: Information was gathered on 63 implementation projects (response 83%). Most projects took place in home care, general practices, and/or nursing homes. Sustainment was attained in 60% of the implementation projects. Six often applied strategies were statistically significantly related to sustainment: 1) realizing coherence between the innovation and the strategic policy of the organization; 2) arranging to have a specific professional responsible for the use of the innovation; 3) integrating the innovation into the organization's broader palliative care policy; 4) arranging accessibility of the innovation; 5) involving management in the implementation project; and 6) giving regular feedback about the implementation. In three-quarters of the projects, barriers and facilitators were encountered relating to characteristics of the care organizations, such as employee turnover and ratification of the project by the management. CONCLUSION: Applying the six strategies enhances sustainment. The organization plays a decisive role in the sustainment of innovations in palliative care. Engaging the management team in implementation projects from early onset is of utmost importance.

Implementation and sustainment of palliative care innovations within organizations for people with intellectual disabilities: A multi-method evaluation.

BACKGROUND: Providing palliative care for people with intellectual disabilities (ID) is challenging and professionals caring for people with ID often received limited training in palliative care. OBJECTIVE: To gain insight into the implementation and sustainment of palliative care innovations, originally developed for the general palliative care population, in organizations for people with ID. METHODS: A multi-method evaluation was performed of nine implementation projects concerning three palliative care innovations. Methods included document analyses of project proposals and reports, group interviews with project managers and professionals, and a questionnaire completed by projects managers. Factors influencing implementation were categorized using the Consolidated Framework for Implementation Research. RESULTS: The three innovations were applicable in organizations for people with ID, although some adaptations had been made. Implementation activities were focussed on training, cooperation and dissemination of the innovation. Influencing factors were mostly related to the inner setting of the organization, including management support and available resources. Five of the nine project managers were not sure if the innovation was sustained properly within their organization. CONCLUSIONS: Innovations originally developed for use in the general palliative care population can be successfully implemented in organizations for people with ID, although adaptation to the specific care setting might be necessary.

The role of partners' fatigue and the patient-partner relationship in the outcome of cognitive behavioural therapy for chronic fatigue syndrome.

BACKGROUND: In chronic fatigue syndrome (CFS) little is known about how partner-related factors influence patients' fatigue symptoms and treatment outcome. We examined partners' fatigue severity, and determined the role of partner-related factors for patients' symptoms and the outcome of cognitive behavioural therapy (CBT). METHODS: 1356 CFS patients and their partners completed baseline measures of fatigue severity (Checklist Individual Strength), causal attributions of symptoms, partner responses to patient symptoms, and relationship satisfaction. Fatigue in partners of patients with CFS was compared with fatigue in age- and gender-matched controls from the Dutch population. Associations between partners' fatigue severity and other partner-related factors were determined. In a subgroup of 760 CFS patients who completed CBT, logistic regression analyses were used to identify partner-related baseline predictors for treatment outcome (fatigue severity, functional impairment). RESULTS: Partners' fatigue (M = 21.66, SD 11.60) was significantly lower than in controls (M = 24.58, SD = 11.02) (p < .001) and not related to patients' fatigue (r = -0.02, p = .58). Partners' fatigue was correlated with patients' functional impairment (p = .001), partners' and patients' relationship dissatisfaction, negative partner responses, and partners' and patients' psychological attributions of patient symptoms at baseline (all p < .001). After controlling for patients' baseline fatigue severity and functional impairment, only relationship dissatisfaction as reported by (female) patients significantly predicted worse treatment outcome. For male patients with female partners, higher partners' fatigue severity predicted higher fatigue severity after CBT. CONCLUSIONS: Female partners' fatigue and relationship dissatisfaction as reported by the female patient should be addressed in CBT for CFS, as these factors affect treatment outcome.

What is important for advance care planning in the palliative phase of people with intellectual disabilities? A multi-perspective interview study.

BACKGROUND: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities. METHOD: In-depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis. RESULTS: Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate. CONCLUSIONS: A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care.

Advance Care Planning in Palliative Care for People With Intellectual Disabilities: A Systematic Review.

CONTEXT: Advance care planning (ACP) is defined as a person-centered, ongoing process of communication that facilitates patients' understanding, reflection, and discussion of goals, values, and preferences for future care. There is evidence for the general palliative care population that ACP increases compliance with patients' end-of-life preferences and improves quality of care near the end of life. OBJECTIVES: To gain insight into what is known about the use and effects of ACP in palliative care for people with intellectual disabilities (IDs). METHODS: Four databases were searched systematically: PubMed, PsycINFO, Embase, and CINAHL. A stepwise procedure was used to identify relevant studies based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. The review included empirical quantitative, qualitative, and mixed methods studies concerning people with ID who receive palliative care or who died non-acutely, and describing ACP. Methodological quality was graded using a critical appraisal tool. RESULTS: A total of 14 studies were included. Most studies examined the perspective of professionals and/or relatives. None of the studies focused on the perspective of patients with ID. The studies concerned different elements of ACP, mainly decision-making and organizational policies. No effect studies were found. Obstructing factors were difficulties in recognizing palliative needs and uncertainties among relatives and professionals about their roles and tasks in ACP. Conducive factors were good working relationships between professionals and relatives. CONCLUSION: There are some indications that ACP could be useful for people with ID, but more knowledge is needed about whether and how ACP should be used.